Well I have to wait until the 25th to talk the the Rheumatologist but my blood work came back positive for HLA-B27. Which is from my symptoms, a sort of arthritis. The nurse said is it probably ankylosing spondylitis. Which explains all the weird pains I have. Some days are better than others and in different places.
But I just keep thinking how scared I am. What does this mean? I am going to need a walker soon? I don't know how bad it is or long I have had it. I have been complaining to doctors for years now and they just say take some ibuprofen.
They never bothered to look into why I hurt all the time. I guess I am glad I found a good Rheumy that will find out all this stuff. I mean how did he even know to check for this?
Ok I'm done boobing.
I'm just a weirdo
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Lovechild3
Why don't Doctors try to find the cause of the pain?
I don't understand why doctors just try to cover up the problem with meds instead of finding out what is causing the pain. I went through that for a year until I put my foot down and demanded to be referred to a neurologist. I know this all sucks. I am so sorry that all of us have to go through it. Other people do not understand, but RLS or arthritis is terrible. I don't know what I would do without my meds.
Jamie W.
Jamie W.
(((((((((((Sugar))))))
Hi Sugar,
I had to look that stuff up. Had no clue what it meant.
"my blood work came back positive for HLA-B27"
http://hcd2.bupa.co.uk/fact_sheets/mosb ... litis.html
Ankylosing spondylitis (AS) is a type of arthritis that mainly affects the spine, where the joints of the spine and the joints between the spine and pelvis become inflamed. This results in pain and stiffness in the neck and back. Although there is no cure for AS, exercise can help relieve symptoms, and medicines are available to reduce pain.
WOW, Sugar I know there is so much going on for you, this was out of left field for sure. I just wish I were closer some days for tons of people here on the board. At lwast I could run by, go to lunch, take the kids for an evening.......it feels crummy knowing that all I can really do is send you my love and prayers through cyber space.
You still got tons of love and support here honey, don't forget that. Hope all is getting better with your dad, father in law, and school. Give your mom a hug and take one for yourself from me.
hang in there.
I had to look that stuff up. Had no clue what it meant.
"my blood work came back positive for HLA-B27"
http://hcd2.bupa.co.uk/fact_sheets/mosb ... litis.html
Ankylosing spondylitis (AS) is a type of arthritis that mainly affects the spine, where the joints of the spine and the joints between the spine and pelvis become inflamed. This results in pain and stiffness in the neck and back. Although there is no cure for AS, exercise can help relieve symptoms, and medicines are available to reduce pain.
WOW, Sugar I know there is so much going on for you, this was out of left field for sure. I just wish I were closer some days for tons of people here on the board. At lwast I could run by, go to lunch, take the kids for an evening.......it feels crummy knowing that all I can really do is send you my love and prayers through cyber space.
You still got tons of love and support here honey, don't forget that. Hope all is getting better with your dad, father in law, and school. Give your mom a hug and take one for yourself from me.
hang in there.
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
it feels crummy knowing that all I can really do is send you my love and prayers through cyber space
Becat, you have NO IDEA just HOW helpful that is? God is listening. He wouldn't give things to people He knows couldn't handle it.
Everyone that I've met here and on We Move, gives me faith that there is still good in the human race.
One more thing I told doc, if RLS puts you on the constant move, you'd think every one of us would be Twiggy! He got a chuckle outta that one
Love ya
Penguin
Becat, you have NO IDEA just HOW helpful that is? God is listening. He wouldn't give things to people He knows couldn't handle it.
Everyone that I've met here and on We Move, gives me faith that there is still good in the human race.
One more thing I told doc, if RLS puts you on the constant move, you'd think every one of us would be Twiggy! He got a chuckle outta that one
Love ya
Penguin
Beware the Penguin
Hi everybody
It's Jan
Well, I've just got to say, I'm so sorry Sugar! It seems like if it's not one thing, it's another, doesn't it? Sometimes, problems build up like boulders on the side of a mountain and you're afraid they'll just come tumbling down. I know, honey, I feel like that, too!
But, Becat's right. You've got us. I'm one of "us" and I need "us", too. That may sound silly to you, but I'm battling a couple of things right now, too. I don't have arthritis and RLS, but I have fibro and RLS and I can't seem to find a doc that will help me. But, gosh darn it, good people keep coming our way, don't they Becat. Look at Penguin. I've been a member here, almost as long as Becat. Used to be REALLY ACTIVE. Not so recently. Becat and I are wonderful friends (see, I CAN spell it--HAHA), but I've been distracted with one thing, then another, and haven't posted much this calendar year. And, look whose come up to the plate--you Sugar and you Penguin. Yes, I haven't posted, but I've lurked. And, you have both helped ME!
We ARE a family, old and NEW. And, together, we will all get through this! I know Becat so well and she means every word when she says she would come to you in a second if she could. So would I. But, cyberhugs will have to do, good thoughts will have to do, but here they are strong--stronger than most places because they are built on HOPE. We've been through so much, haven't we Becat? And, in your short time, Sugar and Penguin, look what you've done?
Penguin, I can't tell you how much you've help me these last few days! I can deal with RLS--This new thing has been getting to me, together with the RLS, so I've got a new challenge. So, I'll deal with it, but I've got some new members of my family to lean on. We'll all get through it.
I may not post much, but I read a lot, I take in a lot, I "feel" a lot--Becat knows, she knows me so well. She knows I mean every word I say.
Sugar, you hang in there. We are here for you, honey. Prayer is powerful and so is love. You have both here. Thank you for all you have done for others and for ME. Penguin, you have been such a great help to me this week. I'm glad I reached out to "help" you. I received help ten-fold. Becat, you are my friend in the woods, you are my friend forever. I love you so much.
Jannie
Well, I've just got to say, I'm so sorry Sugar! It seems like if it's not one thing, it's another, doesn't it? Sometimes, problems build up like boulders on the side of a mountain and you're afraid they'll just come tumbling down. I know, honey, I feel like that, too!
But, Becat's right. You've got us. I'm one of "us" and I need "us", too. That may sound silly to you, but I'm battling a couple of things right now, too. I don't have arthritis and RLS, but I have fibro and RLS and I can't seem to find a doc that will help me. But, gosh darn it, good people keep coming our way, don't they Becat. Look at Penguin. I've been a member here, almost as long as Becat. Used to be REALLY ACTIVE. Not so recently. Becat and I are wonderful friends (see, I CAN spell it--HAHA), but I've been distracted with one thing, then another, and haven't posted much this calendar year. And, look whose come up to the plate--you Sugar and you Penguin. Yes, I haven't posted, but I've lurked. And, you have both helped ME!
We ARE a family, old and NEW. And, together, we will all get through this! I know Becat so well and she means every word when she says she would come to you in a second if she could. So would I. But, cyberhugs will have to do, good thoughts will have to do, but here they are strong--stronger than most places because they are built on HOPE. We've been through so much, haven't we Becat? And, in your short time, Sugar and Penguin, look what you've done?
Penguin, I can't tell you how much you've help me these last few days! I can deal with RLS--This new thing has been getting to me, together with the RLS, so I've got a new challenge. So, I'll deal with it, but I've got some new members of my family to lean on. We'll all get through it.
I may not post much, but I read a lot, I take in a lot, I "feel" a lot--Becat knows, she knows me so well. She knows I mean every word I say.
Sugar, you hang in there. We are here for you, honey. Prayer is powerful and so is love. You have both here. Thank you for all you have done for others and for ME. Penguin, you have been such a great help to me this week. I'm glad I reached out to "help" you. I received help ten-fold. Becat, you are my friend in the woods, you are my friend forever. I love you so much.
Jannie
No one is alone who had friends.
-
Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Sugar, I cannot believe everything that has been put on your plate. One thing that I can do is listen. Not much, I know, but i have a kind heart and the hearing of a bat! 
I "hear" and i listen. Seems to me that those two things are rare. Not here! Not with you all. What a pleasure to get to know you all.
Sugar, you need to let us listen VENT AWAY CHICA!
Jan, this Fibro/RLS thing really *sucks* doesn't it. Just got another "diagnosis" from the X MIL....my "problem" is too much computer work.....GOOD GRAVY! Yup, everyone I know that uses a computer is in THIS MUCH FREAKIN PAIN. Very hard to keep my red head temper in check sometimes. Just one more thing I have to fight.
I hope I could help out in some small way. In such a very short time you all have become very dear to me.
Becat, girl, if i could be accessible for you, I'd be there in a heartbeat as well. That goes for everyone.
loves ya
Penguin
I "hear" and i listen. Seems to me that those two things are rare. Not here! Not with you all. What a pleasure to get to know you all.
Sugar, you need to let us listen VENT AWAY CHICA!
Jan, this Fibro/RLS thing really *sucks* doesn't it. Just got another "diagnosis" from the X MIL....my "problem" is too much computer work.....GOOD GRAVY! Yup, everyone I know that uses a computer is in THIS MUCH FREAKIN PAIN. Very hard to keep my red head temper in check sometimes. Just one more thing I have to fight.
I hope I could help out in some small way. In such a very short time you all have become very dear to me.
Becat, girl, if i could be accessible for you, I'd be there in a heartbeat as well. That goes for everyone.
loves ya
Penguin
Beware the Penguin
How Could I not Be THankful
Penguin your right.....there are still good humans. We've got some of the best right here. And thank you for offering your comfort as well. I'd take it, just the way I'd give it. Hugs to ya.
You know, I have a theory,
Smile at everyone, look them in the eye........Just say Hi......you never know if God is sending you an angel or your suppose to be someone elses.
There are far too many days that I wish we all had the options of being closer, it just seems shameful that those of us that really understand can't Physically help each other out. Can't just curl up on the couch and hand each other tissues. Make each other laugh.
It sounds odd to say I'm thankful for RLS, but there have been days in the last yr that I have been.
#1. I could have had something so much worse. Right?
#2. The yr. I have been here on the board has brought some wonderful people into my life I didn't know I missed until I met them.
#3. I know I've got support, even on my worst day.....that is priceless.
I do think of many of you as family. When I met the few wonderful people at the National Meeting, it was like meeting family. The love was already there. I just needed a voice and the personal interaction to top all my heart held for these people. I'm a hugger, so I got to hug each one and it was a gift.
Jumpyowl, Rubyslippers, Dale, Ann, Mike, and Mike's Brother Carl. It was magic, in the corniest of ways. It was such a warm, natural feeling being with them all. Just not enough time to spare. Jan, Lyndarae, and Sara didn't get to come either. Sara waved from the moutain and it was felt. Each was missed by us all. Jan and Lyn..... This year right?
I so look forward to Orlando, in Nov........can't wait. I hope a ton of us get to go.
All of this is not to say that my family and friends are not great, supportive, or caring. There's a basic need for all of us to feel normal. Put yourself in a room with 200 people that have to move. It's a riot.
These wonderful people here have gotten me through more than one rough spot....I'm sure they will continue.
Every new person on this board should know that it is all honest. It's real. The love and comfort that is given out is not just for a few. You post, we'll answer. Your need support, you'll get it. It's quickly a cyber family when you open up and give it a chance.
Love and hugs to all.
You know, I have a theory,
Smile at everyone, look them in the eye........Just say Hi......you never know if God is sending you an angel or your suppose to be someone elses.
There are far too many days that I wish we all had the options of being closer, it just seems shameful that those of us that really understand can't Physically help each other out. Can't just curl up on the couch and hand each other tissues. Make each other laugh.
It sounds odd to say I'm thankful for RLS, but there have been days in the last yr that I have been.
#1. I could have had something so much worse. Right?
#2. The yr. I have been here on the board has brought some wonderful people into my life I didn't know I missed until I met them.
#3. I know I've got support, even on my worst day.....that is priceless.
I do think of many of you as family. When I met the few wonderful people at the National Meeting, it was like meeting family. The love was already there. I just needed a voice and the personal interaction to top all my heart held for these people. I'm a hugger, so I got to hug each one and it was a gift.
Jumpyowl, Rubyslippers, Dale, Ann, Mike, and Mike's Brother Carl. It was magic, in the corniest of ways. It was such a warm, natural feeling being with them all. Just not enough time to spare. Jan, Lyndarae, and Sara didn't get to come either. Sara waved from the moutain and it was felt. Each was missed by us all. Jan and Lyn..... This year right?
I so look forward to Orlando, in Nov........can't wait. I hope a ton of us get to go.
All of this is not to say that my family and friends are not great, supportive, or caring. There's a basic need for all of us to feel normal. Put yourself in a room with 200 people that have to move. It's a riot.
These wonderful people here have gotten me through more than one rough spot....I'm sure they will continue.
Every new person on this board should know that it is all honest. It's real. The love and comfort that is given out is not just for a few. You post, we'll answer. Your need support, you'll get it. It's quickly a cyber family when you open up and give it a chance.
Love and hugs to all.
Well, if there's ONE thing you've done, Penguin, it's
make me post more~
Hi, it's Jan
Hi, Becat, you sweetie~ Hi, Penguin
I was just sending you an email, Becat, when I decided to check out this Board one more time tonight. And, guess what, you had posted. Just like old times. hehe Well, you best your booties, I'm coming to Orlando! If I have to sell a kidney (and I don't think I'll have to), I'll be there honey. I'll be the one with the HIVES and the one coughing loudly in the corner. hehe Seriously, this time I want to see all the people like ME in the room, walking around, knitting, fidgeting JUST LIKE ME (hehe) while someone is speaking. I want to meet the people I've "talked" to for a year. I want to see YOU Becat!
I second everything Becat says, not that it needs to be seconded. This place is so special--if you just give it a chance. Listen everyone. Anyone who is new. You have anonymity--we don't KNOW your name, we don't HAVE to know YOU. BUT we do CAT get to know YOU if you WANT us to if you open up. It's a safe place and it can be a wonderful place--full of help, hope and love. And, I love the way Becat puts it: You never know who your angel is or whose angel you are supposed to be.
Much love
Jan
Hi, it's Jan
Hi, Becat, you sweetie~ Hi, Penguin
I was just sending you an email, Becat, when I decided to check out this Board one more time tonight. And, guess what, you had posted. Just like old times. hehe Well, you best your booties, I'm coming to Orlando! If I have to sell a kidney (and I don't think I'll have to), I'll be there honey. I'll be the one with the HIVES and the one coughing loudly in the corner. hehe Seriously, this time I want to see all the people like ME in the room, walking around, knitting, fidgeting JUST LIKE ME (hehe) while someone is speaking. I want to meet the people I've "talked" to for a year. I want to see YOU Becat!
I second everything Becat says, not that it needs to be seconded. This place is so special--if you just give it a chance. Listen everyone. Anyone who is new. You have anonymity--we don't KNOW your name, we don't HAVE to know YOU. BUT we do CAT get to know YOU if you WANT us to if you open up. It's a safe place and it can be a wonderful place--full of help, hope and love. And, I love the way Becat puts it: You never know who your angel is or whose angel you are supposed to be.
Much love
Jan
No one is alone who had friends.
i knew it
Penguin, I knew you were a redhead. What else could explain that fiestyness? Well since that last post I went back and he said I more than likely have AS but it's still too early to see it in the x-rays.
I have a straightening in my neck where it should be curved which explains muscle spasms or something like that. He said that my frequent kidney infections, fatigue, pain all the time, hot all the time, headaches, stiffness, and practically everything else that I can't think of right now, are due to Fibro and AS.
Well! It's about time someone thought to care enought about me to actually see what causes all this mess I have. I thought I would feel better actually having a diagnosis, I guess I don't. Maybe if it was a better one.
Now I get the fun of Gyno visits to see why I bleed for a month at a time every time. Wow what a fun life for me!
I can't let it get me down. I mean I have made it this far, right?
If you guys can, please send some prayers my way. My dad is being moved to a nursing home today, my neice had her ultrasound and they couldn't find her baby's stomach, and I need a break.
Thank you guys. I love all of you.
Sugar
I have a straightening in my neck where it should be curved which explains muscle spasms or something like that. He said that my frequent kidney infections, fatigue, pain all the time, hot all the time, headaches, stiffness, and practically everything else that I can't think of right now, are due to Fibro and AS.
Well! It's about time someone thought to care enought about me to actually see what causes all this mess I have. I thought I would feel better actually having a diagnosis, I guess I don't. Maybe if it was a better one.
Now I get the fun of Gyno visits to see why I bleed for a month at a time every time. Wow what a fun life for me!
I can't let it get me down. I mean I have made it this far, right?
If you guys can, please send some prayers my way. My dad is being moved to a nursing home today, my neice had her ultrasound and they couldn't find her baby's stomach, and I need a break.
Thank you guys. I love all of you.
Sugar
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Penguinrocks
- Posts: 703
- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact: